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dutch
11-23-2011, 04:38 PM
Hello,
My son had his second large dose of RTX 2 weeks ago and now has elevated CRP and ESR. Has anyone ever had this happen? His doctor is asking for weekly labs to monitor and is considering a third dose. I know he needs 8 weeks to get the benefit, but I am trying to figure out what is causing inflammation if his b cells are depleted. Any insight?

Al
11-23-2011, 05:18 PM
Hello,
My son had his second large dose of RTX 2 weeks ago and now has elevated CRP and ESR. Has anyone ever had this happen? His doctor is asking for weekly labs to monitor and is considering a third dose. I know he needs 8 weeks to get the benefit, but I am trying to figure out what is causing inflammation if his b cells are depleted. Any insight?

I haven't had direct experience with RTX (yet), so I will defer to the many forum members who have. But I think two weeks is not enough for the RTX to severely deplete the B cells. And even then, there are a lot of antibodies in the system that need to be cleared before inflammation goes down. This is why massive amounts of prednisone are usually called for. I think (again, others have more experience with this) that the usual RTX protocol calls for four infusions. Does this help?

Al

dutch
11-24-2011, 01:48 AM
Thanks. I am hoping we see progress by next Monday. He is home from college so maybe TLC and home cooking? RTX is either given in 4 weekly lower doses or 2 biweekly large doses. I know it takes 8 weeks for most to see/feel the effects, but am concerned about the effects of walking around with so much inflammation, as evidenced by elevated CRP, etc.

ScreaminMeanie
11-24-2011, 01:58 AM
As Al said, most likely the rtx hasn't had a chance to do its magic yet. I know it's a small sample, but it seems to me the people here who've had the 4-dose protocol seem to be doing better than the people who've had the 2-dose protocol. In my case, it took about 8 weeks before there were noticeable results (bloodwork-wise) from the rtx, but it's been pretty smooth sailing ever since (I'm six months post-rtx at this point, and all my bloodwork is normal and I have no WG symptoms at the moment).

dutch
11-24-2011, 02:39 AM
Thanks. I will just try to be patient, something I am not good at! I guess it is one of the many things I will learn along this journey. Karen

Sangye
11-24-2011, 04:44 AM
Since it takes rtx 6-8 weeks to start working, the increased CRP and ESR may be a reflection of Wegs activity continuing to increase.

Prednisone helps to keep control of disease activity while the main immunosuppressant gets up to speed. What daily dose of pred is your son taking? It might not be high enough if he has severe disease activity.

pberggren1
11-25-2011, 10:22 AM
It could also be an infection. Rule out all infections first.

dutch
11-28-2011, 10:37 AM
Thanks for the feedback. My son had forgotten to take some bacterium between doses of rituxin. Infection may be a distinct possibility. He is on 60 mg of prednisone daily. Hopefully a week of home cooking and hugs and friends will change things for his tests tomorrow!

Al
11-28-2011, 10:59 AM
Thanks for the feedback. My son had forgotten to take some bacterium between doses of rituxin. Infection may be a distinct possibility. He is on 60 mg of prednisone daily. Hopefully a week of home cooking and hugs and friends will change things for his tests tomorrow!

I contend that there is a lot more nutrition to home cooking than the raw ingredients. My mother was not a great cook, but her cornbread and black-eyed peas (along with, in the early days, reading me to sleep) were better therapy than any commercial medicine!

Al

pberggren1
11-28-2011, 11:04 AM
I contend that there is a lot more nutrition to home cooking than the raw ingredients. My mother was not a great cook, but her cornbread and black-eyed peas (along with, in the early days, reading me to sleep) were better therapy than any commercial medicine!

Al


What are black eyed peas exactly?

Al
11-28-2011, 11:37 AM
What are black eyed peas exactly?

An alternative hip-hop band, of course. But i was talking about the bean, related to the cowpea. It is very big in the cuisine of southern America. For us, it was standard New Year's Day fare (for good luck, of course), though we (even my father, who was a northwest native) craved it at other times as well. These days, I prepare it without the ham that my mother always used, but it will still be on my table January 1.

Al

pberggren1
11-28-2011, 11:38 AM
I will have to come by some day and try this out.

Al
11-28-2011, 11:41 AM
I'd ship you some, Phil, but I think the customs folks would have it polished off before it got to you. Or, you are welcome to show up here on Jan 1!

Al

pberggren1
11-28-2011, 11:43 AM
I would love to be well enough and flush with cash to come and see you.

Al
11-28-2011, 12:30 PM
I would love to be well enough and flush with cash to come and see you.

I may have to hand-deliver, Phil, as sound as I get flusher myself...

Dryhill
11-28-2011, 02:24 PM
Al, please make enough for me as well, it is ages since I have had black eyed beans. :razz:

Al
11-28-2011, 03:42 PM
Al, please make enough for me as well, it is ages since I have had black eyed beans.

(Did I mention the rocking chairs?)

ScreaminMeanie
12-01-2011, 11:10 AM
*waves at Al*

I grew up in the south also. Hoppin' John* is a staple food for me, not just on New Year's Day!

(*Ham hocks or bacon, black eyed peas, onions, rice, and whatever spices you care to add.)

HopeinTN
12-01-2011, 11:43 AM
Oh, I love Hoppin John Soup. We made it a lot back home in Kentucky. Yummy!

Al
12-01-2011, 01:36 PM
Oh, I love Hoppin John Soup. We made it a lot back home in Kentucky. Yummy!

Yep. This is the way my mother made it, though sometimes in soup or stew form (with, often, grits on the side), and sometimes more like a cassarole. It was a love/comfort food for sure. These days, I make it without the meat, and with far less salt. I wonder how it would be with tofu...?

Al

BrianR
12-01-2011, 02:57 PM
Hi Dutch.

How did the CRP and ESR results come back? Are they trending down?

pberggren1
12-02-2011, 07:33 AM
Hi Dutch.

How did the CRP and ESR results come back? Are they trending down?

I think it came back with Hoppin John soup.

dutch
12-03-2011, 06:19 PM
No his numbers have not come down yet. For example, his CRP is 72. He was given a 3rd dose of RTX with a fourth planned for next week. I am worried about the damage of walking around w such high numbers might be doing. Come on RTX work!

dutch
12-03-2011, 06:20 PM
Do you mind me asking how high your numbers were?

dutch
01-10-2012, 03:39 PM
Finally, after 9 weeks from the first dose of RTX , my son's numbers are going down!! (After 4, it was determined he might be under dosed, so 2 more rounds were done) We are all so encouraged. Now, to lower pred and get to remission.

Wishing you all good or greater health in the new year.

Karen

Al
01-10-2012, 04:45 PM
Finally, after 9 weeks from the first dose of RTX , my son's numbers are going down!! (After 4, it was determined he might be under dosed, so 2 more rounds were done) We are all so encouraged. Now, to lower pred and get to remission....

Most wonderful, Karen! Let's hope this lasts!

Al

chrisTIn@
01-11-2012, 02:08 AM
We are all so encouraged. Now, to lower pred and get to remission.

Wishing you all good or greater health in the new year.

Karen

Wishing you the same!
Congratulations for your son! :smile1:

Sangye
01-11-2012, 06:31 AM
That's great news, Karen! Congratulations to your son! :thumbsup:

delorisdoe
01-11-2012, 06:32 AM
Congrats karen

drz
01-13-2012, 03:04 PM
Congrats karen

Love the Jack quote. Thanks for finding it and sharing it here.